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ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Be Careful What You Ask For . I asked for a second opinion, and I'm getting cisplatin, erbitux, and something else. Starting in about 3 weeks.

So when I'm bald, and feel like sh*t, my friends, please remind me why I'm doing this. Well, I'm ugly already; so being both bald and ugly won't be such a bad thing. Not that I'm implying that all bald people are ugly. You see my mind is not totally with me today. But there will be tomorrow.

Right now I'm scared and depressed. But my mood will get better. I need to revive one of my delusions: like I'm an author, or I'm a musician, or I'm a genius. All delusions true; but like most delusions they have comforting value. And these delusions don't get me into much trouble. And they are virtually free. I do buy a book, or guitar strings; but in the run of things they do not cost all that much.

The Chemo will be at Seattle Cancer Care Alliance. Rick.

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I will be praying for you.  Hopefully this treatment will be helpful to you.  Being bald isn't that bad.  I think David is kind of sexy with his new look.  We go in on Monday for 96 hours of chemo again with the 7 agents so what hair he still has will be gone soon. 

fisrpotpe's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

almost 17 years ago, they told me i was going to get ciplatin and 5fu. nurses and doc's told me i would loose my hair and feel like ****. they were correct... i felt like ****, but i did not loose my hair then and still have it now. 

it is true, a friend told me i did loose a head of hair just started with two very thick heads of hair.... fact is it was thick and thinned very little. 

don't worry about the hair, hats this time of year work just fine. 

for certainty i would add lot's of IV fluids durning the series of chemo's. example would be to get fluids on the third day after chemo and then every day if you feel you need them but at least do fluids every other day. many of my local friends have done this with cisplatin and has made it much easier to deal with. 

hope to hear you play a tune for all of us here on CSN

john 

 

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

Those 6 months of sitting getting treatment in the chemo room, changed my whole outlook on how much hair is actually needed to look good Laughing....(I was just thinking about this last night)....I got all my hair cut off last April, but since September I just keep cutting it shorter and shorter....now if it reaches an inch long, I'm back to the beauty shop for a trim.  I have nearly reached the place where I can say "bald is beautiful.....EVEN ON ME!!!" ....LOL.  Hair ain't no biggie! 

I'm excited that SCCA has treatment for you....I know it's hard see "wonderful" at this end of the spectrum....but down the road a ways, you're going to be glad you took this option and ran with it....I truly believe that. 

p

 

katenorwood
Posts: 1808
Joined: May 2012

Rick,

It seems that the second opinion is focused on you.  I feel in my heart with your inner strenghth you will come out the other side a winner !  Take a breath Rick...know now the doctors have your back and we are all beside you as you have been for us !  You'll stay in my prayers my friend....Katie

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

No - Hats ON for you.  I must say, I thought going bald would devastate me.  It turned out to not be such a bad thing at all.  Since it was winter, though, I had to deal with having a cold head.  I wore  a light knit cap almost all the time, and a second hat if I went outside.  Great game plan til I had to go to court one day - sign on the courtroom door told us cell phones had to be turned off, and hats removed - sigh.  After a while, I was fine shopping or going to appointments bare-headed if I was warm. 

I did taxotere, 5-FU and cisplatin for my induction chemo.  Docs said the taxotere would make me go bald - they were nearly spot on the day my hair would start falling out. 

On the plus side, when you feel like poo and it's all you can do to shower, at least you don't have to worry about whether or not your hair looks like a bird's nest. 

Hoping  you can feel the strength I'm asking for for you.

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I got a delusion you need to add ..."comedic writer"Sealed ...  I got a chuckle out of your post, and just when I needed one..made my day better...thanks (hope that is okay to say).

Glad you got a plan ....boy I sure was impressed with SCCA ...I really do hope we have a chance to cross paths up there ...though as I said before .....you may not want to bc I talk too much....but if you keep sweet tea between us, I won't talk as much.  You can have sweet tea can't you??  Gotta have some sweet tea!

 

Keep us posted Rick...your in my thoughts and prayers.

Best,

Tim

 

NOTE:  Great night on CSN ....I'm zipping in and out of posts without getting booted off for a change!!!

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Here in Washington, we put sugar in our marijuana in order to sweeten the pot.

Sorry, I just can't help myself. I had to post it.

In case you are wondering: I am totally square. Don't use either medical or recreational pot; although I pass two (medical) pot suppliers on the way to treatments. Rick.

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

And being sick is a crap shoot like everything else...it's an individual thing.

I had Cisplatin, Taxotere, 5FU and Carboplatin..., never got sick once (as for tossing it). There were many days I didn't feel great, and kind of blah, but not commode hugging drunk ummm, I mean sick.

But there was one incident that I did toss up a belly full of water... I was riding back from fishing once with a buddy. He kept on an on about chemo, what it was like, yada, yada, yada... I finally had to have him pull over, open the door and hurl... Then I told him to STFU and all was well in the universa again.

Anyways, go in knowledgeable of the possible side effects, but plan and focu on the positive...CURE.

Best ~ John

 

 

michdjp's picture
michdjp
Posts: 186
Joined: Sep 2011

My dad had cisplatin, carboplatin and 5fu along with radiation.  While it was not easy,  he

did not lose his hair...at all.  I hope this for you also.  He is 17 months NED and I look at home everyday 

with more pride at the courage and strength he showed just to get through the day and yet day after day

he did it.  When something is too hard for me I often think back to those days and could never compare my 

"hard" to that.  I wish you the best and as skiffin said, Believe.  I never let go of that word for a minute.

all my best 

michelle

 

 

CivilMatt's picture
CivilMatt
Posts: 2809
Joined: May 2012

Rick,

 

Erbitux = acne, at least it did for me.

 

Look around, bald is in.

 

Feeling like sh _ t, goes with the territory, maybe you’ll just be a little nauseated.

 

Why you are doing it, for one thing you are one of the best players we have on the H&N forum’s west coast team (go Washington).  

 

You want to hear a good delusion?  I very much, for real, true have a line on some Golden Retriever pups at a nephew’s house.  My delusion is I actually go and get one.

 

Wishing for you the next 3 weeks of good thoughts don’t let depression and scary rule the roost.

 

Best,

 

Matt

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Okay Matt: Here's a delusion for you. In the near future, my prognosis will be so good (that I'm going to have enough years left) to invite another Golden Retriever to be part of my household (along with wife/caregiver and whatever cats she invites). 

Back in 2008 or so, I would have to drive myself into the hospital for surgeries, and on the way stop at Ravina Park (Seattle) to let Peanut out for her morning run. All on an empty stomach. Although my wife drove me home, I did have to get Peanut out of the car for a little run as we passed the park. Of course, she was always off leash, never a problem. Arlene never got enough trust in the Golden to let her roam. Arlene never was nervous about Peanut attacking anything, but Arlene always was afraid that Peanut would "bother" someone. Rick.

CivilMatt's picture
CivilMatt
Posts: 2809
Joined: May 2012

Rick,

 

I apologize and at the same time can not help myself about dogs.  I absolutely enjoy your stories about Peanut.  I mentioned once I had a beautiful collie named “Oregon”.  You should have heard the remarks when I would call his name in a park (Idaho, California, Nevada…).  He is buried in the Cascade foothills and I can see where he is from many places in the Willamette Valley.  Every time, you share a story I go back to my own good times, that’s all.

 

Dog lover,

 

Matt

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Shelley, Jazzy, Kali & John

Shelley, Jazzy, Kali & John

My lovely wife Shelley and our two Chocolate Lab sisters, Jasmine and Kali...

JG

 

luvofmylif
Posts: 344
Joined: Sep 2012

Cutest photo of John, wife and dogs. What a sweet family.

Just want you to know Rick, that I am sending you prayers and positive thoughts for your battle.  My husband never lost his hair from the Cisplatin but with each dose nausea was harder to control. Meds helped greatly though and replacement fluids which we had to do a couple of extra times in addition to the scheduled fluid replacment.

Wishing you and all in this fight courage and sending this also to your wife. I know it's not easy for either of you.

Joan

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